“People with MS should be wary about getting information solely from media stories and reports or from patients’ blogs,” the provincial health authority says in a strongly worded position paper on the subject, posted to its website. “Be careful about where you get information and where you go for treatment.”

The statement provides critical commentary on the original research study done by Italy’s Dr. Paolo Zamboni, who found 90 per cent of MS patients in his 2008 study had a medical condition known as CCSVI or chronic cerebrospinal venous insufficiency, where malformed or blocked veins in the neck couldn’t adequately drain blood from the brain. A buildup of iron in the brain ensued, Zamboni theorized, causing vertigo, fatigue, sight problems, loss of co-ordination and sensation.

When those veins were unblocked through a procedure similar to balloon angioplasty that unblocks arteries, Zamboni found 73 per cent of those patients reported a decrease in MS-associated symptoms.

The statement from Alberta Health Services says neurologists know MS or its associated conditions aren’t caused by blocked or sluggish veins. If that were the case, people who have had both jugular veins tied off during surgery to treat head and neck cancer should develop MS or an MS-like condition. The statement says if someone has a vein blockage, the head and brain is designed to find alternate drainage routes. Both the jugular veins in the front of the neck and the vertebral veins in the back of the neck drain blood from the brain, depending if a person is lying down or sitting up.

Alberta’s health superboard also describes crucial differences between veins and arteries and how angioplasty — using a balloon or stent to open up narrowed or blocked blood vessels — has been proven safe only when used in arteries for people who have heart attacks or strokes.

Arteries have thick walls because they need to withstand blood pressure as they carry blood. That pressure properly secures stents that are inserted to keep the vessel open, health services says.

“Veins, on the other hand, are thin walled, collapse when not filled with blood and do not tolerate injury well,” health services says. If veins are stretched with balloons, they can react by clotting, then becoming blocked. “Veins clot off permanently if repeatedly or severely injured.”

Even in Zamboni’s study, 47 per cent of jugular veins that had been opened with angioplasty had closed within 18 months — a “failure rate” that is “very high,” health services says. The risk of having the procedure done a second time isn’t known, it notes.

“Thus, venous angioplasty will therefore predictably cause harm within the first year to about 50 per cent of the people who have the procedure performed. There are no situations where venous angioplasty is an accepted and satisfactory treatment.”

Gregory Chant, a 57-year-old from Camrose who was diagnosed with MS in 2005, called the information an “eye-opener. It should scare people into really, really considering this before they do” get the liberation treatment, Chant said. He has always questioned Zamboni’s research, noting that science has shown MS destroys the protective sheath called myelin around nerves. Opening veins can’t bring back those protective sheaths, Chant said.

“It’s an insidious disease and people are desperate then they will latch onto anything,” said Chant, who has lost sensation in his fingertips and from the waist down. He is on permanent disability. But while he originally said he, too, would get the liberation treatment if he won enough money through the lottery, he said the Alberta health authority’s statement changed his mind. “Leave the veins alone,” he said, urging the superboard to make the statement more easily accessible for every MS support group to read. “There is nothing connecting MS” with the treatment.

But Tom King, pastor of the Clearwater Cowboy Church who lives in Sundre and went to India in May where a stent was put into his left jugular vein, said while he understands medical experts have to be cautious, he said the proof to Zamboni’s study is not in clinical research but in the thousands of first-hand success stories of people around the world.

“They have to speak to more people who have spent $20,000 to have it done,” said King, who has lived with MS for 30 years. He had used a wheelchair, didn’t have any feeling in his left hand for decades and had debilitating headaches daily. King said his headaches disappeared when his blood vessels were opened. He can now type using more fingers. He can tuck in and button his shirt.

He said those improvements — especially the disappearance of headaches — can’t be explained away with the placebo effect. The position paper by Alberta Health Services says the more a procedure costs, the more people will believe the treatment improved their condition. On average, those going to India or Poland or elsewhere for the treatment pay about $30,000.

“If you believe a treatment will improve your walking, your confidence will improve and you will walk better,” health services says. “In addition, placebo treatments actually cause changes in brain chemicals. It is possible that this can improve function as well as well-being temporarily.”

It says patients reported similar improvements with earlier proposed therapies for MS, which later proved to have no benefit. Zamboni’s patients were given certain tests to see if they improved, then automatically improved the second try simply because they better understood what to do, health services said.

“I’m not practising my lack of headaches,” King said, noting he believes the position paper will anger some people. He agreed people should do their homework before flying overseas, but he said he hasn’t heard from anyone who hasn’t experienced improvements. Nor will he rely on his medical doctor in Edmonton who he said was “narrow-minded” and discouraged King from going.

“There is no way (the placebo affect explains how) my left hand was dead for 30 years and now I have sensation in my fingertips. Is that not proof to some extent? Some may be placebo, but I have a hard time believing it.”

Neil Pierce, president for the Alberta division of the MS Society of Canada, said the position of health services will help better inform people.

“I think there’s been so many pieces of the story that have been missed or overlooked … I think social media has created a lot of misinformation,” Pierce said. “If you ask me what keeps me up at night, this issue does because I worry about people going out of the country to for-profit clinics. I think we should be doing trials here and let’s put an end to it. Either it works or it doesn’t.”

Scientific proof is important, Pierce said. The medical community owes it to people curious about or who have already had the liberation treatment to make sure Zamboni’s theory isn’t automatically discounted.

“We have to give some credence to those people’s experiences,” he said. “We want to keep people’s hope alive.”

To read Alberta Health Services’ position statement on the liberation procedure for MS, go to www.albertahealthservices.ca/1409.asp, then click on the link dated Aug. 6.

thank you for posting this. i think there are certain groups one in particular that i have recently come across who is trying to link up persons with m.s to go to bulgaria to have this procedure.i know a lady who is in my m.s support group who is considering getting this procedure in bulgaria.i spoke to her and told her how i feel about this .personally i dont feel that there is enough research done on this treatment as of yet.

My mother went to India in August 2010 to have this procedure. Her condition had been worsening and she was becoming desperate after many other treatments proved fruitless. After the imagery was performed to gauge the blockages, the 2 doctors argued in the surgery room whether to put a stent in or not as the ballooning did not produce the desired results. In the end, 2 stents were put in.

The results of the procedure produced alleviation of several symptoms including blurred vision, headaches and some motor control. She was able to raise her legs while laying on her stomach, walk further (200 feet/day) and better with her walker (prior to she used her walker on average for about 50 feet or so per day), had better balance, slept through the night without needing to go the bathroom every hour, and less daily fatigue.

These gains in daily living easily justified the expense ($30,000) however she suffered from extreme neck pain caused by the stents in her neck. Within a few months, the symptoms began to return. 6 months later, all the symptoms had returned with the added acute neck pain during any physical activity including being picked up for transporting between her wheelchair and a vehicle. Imaging performed by a retired vascular surgeon revealed the veins in her neck had started to clot once again and currently she is at or worse off, in terms of blood flow, than she was before the procedure. One could go so far as to say it was the placebo effect that alleviated the symptoms and not the procedure. The end result, is the same situation as pre-procedure with the added neck pain and the stents which cannot be removed or altered and may be causing the rate of clotting to increase (which now requires her to take blood-thinning drugs and Aspirin for the rest of her life).

Also, appointments with MS specialists in BC have been rather demoralizing. When they learn that my mother has received this treatment, we are met with indifference, as if they don't want to become associated with the procedure. Practicing vascular surgeons will not even see her for an appointment.

I wanted to add our experience with this procedure for all those wishing to 'experiment' on themselves. Scientists want time to research this technique and therein lies the problem as MS-sufferers don't have it.

Consider this a warning from someone who continues to deal with the aftermath of this technique, as many others are starting to find out that their relief from symptoms are short-lived too.

Here's to being hopeful that this procedure is thoroughly researched and utilized to its fullest potential. All of you are in our thoughts and prayers.

Dean,
Thank you so much for sharing this experience. No, I really really mean THANK YOU so much. This topic doesn't get a lot of play on this forum because we're having trouble seeing how the science plays out.

Your mother's experience with this and your willingness to talk about it, adds a different perspective to what the social forums on CCSVI would want us to believe. The placebo effect in MS treatments is well over 50% effective, which is a huge number when it comes to evaluating anecdotal stories of success, whether it is CCSVI or bee sting therapy.

Again, I can't emphasize enough to everyone - beware of doing this procedure if it involves medical tourism - where you will pay to travel abroad for treatment. If you are going to try this approach, you need to know that your home based medical team is available and ready and willing to help you later if complications arise. Going abroad for treatment may very well jeopardize your future treatment like it has for Dean's mom.

Dean, I'm so sorry your mom's condition has gone backward. About the only good thing out of her experience is that she tried it for the rest of us. I'm so sorry the results ultimately aren't good.

Give her my best and tell her we will hope that her condition stabilizes and improves.

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